April's thoughts about writing, life, and junk food

Links

Books

Ten years ago, my family made a decision we have never regretted. Ten years ago we asked that my father be allowed to die.

No one at the hospital suggested we stop aggressively treating my 80-year-old father. Even as test after test came back negative, even as he continued to deteriorate. He asked my brother Joe where Joe was, asked my mom what time the curtain would go up, and thought it was 1902.

He had long suffered from Alzheimer’s and Parkinson’s, his life a narrow circle from bed to living room, navigated by his walker. There were times his brown eyes were full of love, and times when they were blacker, lost, blank. Then a sudden illness began to ravage his body. In the hospital, he was put on three antibiotics. Still his skin was so clammy from fever that each new nurse recoiled when she first touched him.

I made a list of questions for his doctor – What was my father’s diagnosis? His prognosis? Why did his white blood count keep climbing? Why did he cry out whenever they moved him? And a few days later I added - What could we stop? - to my list of unanswered questions.

A series of problemsTo the hospital staff, my father was no longer a person, but a series of problems. His unrelenting diarrhea indicated a bowel infection. But when the sigmoidoscopy turned up negative, the specialist only shrugged when I asked what was wrong. “Who knows why?” I wrote down carefully. The doctor who admitted Dad concentrated on getting his fever down. The nurses wanted to see if my father was ‘oriented.’ “Hank?” one cajoled him, prodding his shoulder while he stared at me with sagging, rheumy eyes. “Hank, do you know who this young lady is?”

I wanted to tell her to stop poking him, to leave him alone, to stop us both looking at each other with embarrassed eyes. Finally, my dad mumbled something like “Mary once or twice.” Or was it Merry? Or Marry?

My name is April.

He slept more and more, sometimes moaning. When he woke, he might say a few words, and I would think, I have to remember this. These might be his last words. And then he would mumble something else.

Planning for events we knew wouldn't happenThe social worker and discharge planner discussed the options with us, which I dutifully wrote down. If my father got better and seemed capable of rehabilitation, he could go to a skilled nursing facility. This was meant, the discharge planner explained, strictly to be transitional. Dad would have to be able to participate in physical therapy. At this point, my father couldn’t participate in rolling over. Parkinson’s had frozen his legs. When he was first admitted, Joe had tried to push Dad’s legs, hovering a few inches above the bed, down onto the mattress – at least until my father screamed.

If Dad didn’t meet the criteria for a skilled nursing facility, he could go to a nursing home. Or home to my mother, who had already injured her hip and back trying to lift him – from the toilet, the bed, the bath, the chair. And that was when he knew who she was, where he was.

Even as it became clear that he would probably never be coherent again, never walk again, never be anything more than a confused, bed-ridden person waiting for pneumonia to settle into his lungs, no one talked about just – stopping. Not the doctors, not the nurses, not the social worker. My dad talked about it without words. Even when coaxed, he ate nearly nothing. He closed his mouth and turned his head. His body began to forget how to swallow even water.

There was one horrible day when dad began crying out in pain - luckily my mom was at the bank getting into their safe deposit box - and I could not get the nurses to speed along the process for getting morphine. I would go out and beg, and the nurse would chirp that she had paged the doctor. Then I would have to go back to the room, go back to his muffled screams.

If you had a cat this sick...My brother and I started to have conversations that began, “If you had a cat this sick…” and then our words would trail off. What kind of children were we?

We finally steeled ourselves to talk with my mom. She found my dad’s living will. Step by step, it spelled out all possible interventions. And in all cases, my dad had initialed that he did not want them. My father’s final gift was to take the decision out of our hands, or at least make it easier for us to release him.

Now we had to tell the hospital personnel. I found his young nurse and told her we wanted to stop everything, including the IV fluids. With wide eyes, she said, "Then your father’s going to have to drink a lot more!" Feeling like the angel of death, I explained what I meant. We wanted my father to die. The doctor grasped it more quickly. But why hadn’t he brought it up himself? He had a copy of my father’s living will. He knew my father’s wishes.

On the fourth day of no IV fluids and no antibiotics, my brother called me. The doctor had been by and said Dad’s heart and lungs sounded good. I felt awful. No matter how

much I reasoned with myself – But he can’t even swallow! But he’s too weak to even sit up! But he has a catheter and keeps having attacks of diarrhea on his bedclothes! – I would

think, maybe we should have tried harder.

A few hours later, my father died. My mother was holding his hand, with classical music playing softly in the background. I realized he died the way he would have wanted, and the way he lived, quietly and with dignity.

About the last thing my father said to me was, “You learn how to do it just by doing it.” And he was right. My father learned how to die, and we learned how to fight, not for his life, but for his right to die.

I have very strong feelings about this subject, April, as I went through something very similar with my own father. We need to change the way our elderly and terminally ill patients are treated in the U.S., and as far as I'm concerned it can not happen soon enough.

This post brought tears to my eyes, having been through something similar with my father last year. Every staff member at the hospital gave us a different story. Intervention after intervention. It was as if none of them wanted to be accused of not trying hard enough to keep him alive. Finally, one doctor sat us down and said "He is in the process of dying. Here's how we can make it more comfortable for him." I am so thankful for that doctor.

I know why this is cause for celebration--honoring your father when it was most painful.

April, you and your family were very brave to follow your father's wishes, even when it was so painful. From my own experience as relatives we often have so many years invested in trying to help someone at the end of life that it's hard to stop fighting, even when the reality of what can be gained is a few days weeks or months in a condition no one would want. Hospitals have to honor relatives wishes and they also get invested in struggling without wanting to brutally tell a family what is and is not possible (or in some cases fearing being sued by relatives who want to "do everything" in hopes of a miraculous recovery or simply in order to postpone the worst of the grief).

Re: I know why this is cause for celebration--honoring your father when it was most painful.

As a nurse I've seen this scenario time and time again. I've also been through it with my mom, though the circumstances were a bit different. One of the hardest things I've had to deal with in my career were families who, in spite of all the evidence, in spite of all the suffering, refused to let go. Though nurses learn from the very beginning it's not our place to judge, there isn't one of us who never thinks if this were my mom or dad, I'd... It's a brave and often difficult decision that no one should ever have to make. Thank you so much for sharing this, April. xox

thank you

April, this is the post that is making me stop and take the tiny bit of time required to figure out how to post comments on blogs. Thank you for your thoughtful comments about your father's death, and his life. --Sue Long

To lose your mind, your personality, is such a scary thing. Maybe not for the person, I don't know, although he often looked so sad and befuddled. My dad pretty much was his mind - he was never an athlete, never got too close to too many people - so the loss seemed especially keen.